Saturday, February 4, 2017

Just when I think I have adjusted to the emotions of having a child with special needs, when the therapies and daily injections have become such a part of our life that I no longer lament over their need; something, some nugget of compassion from a stranger, watching a video on the advances of PWS medical research, or a sudden visceral realization of a side of PWS that until then was just a checkpoint in an informational brochure, will crash into me. Then the tears come.
They are no longer sobs. No, I am past that. But the grief is still a part of my life and I realize at these times that it always will be.

It comes when watching her try to interact with peers and not succeeding as well as her little sister. Drying her tears because, while she may not understand what is happening, she feels the sadness of being left out, of not being able to communicate well enough for the attention of a young child, because her attempt at inclusion is at times taking the toy they are playing with, or simply making a loud, repetitive whining sound not appropriate for a 5 year old. My attention is easily diverted when we are in a room of children because I am listening, waiting to intervene because my daughter does not always play well with others, though I know she desperately wants to.

It comes when she makes known her overwhelming sense of injustice if she thinks her younger sister is getting more food than her.

It came when, because of bureaucracy and the inability of a staff worker to get the right paperwork to the right people, she was without her growth hormone shot for two weeks. Five days into what I can only assume was a hormonal roller coaster, I held her while she sobbed like no 5 year old ever should.

It came when, in a state of feeling overwhelmed and looking forward to when free time does not require a babysitter or organizing it with my husband, I had the shocking realization that this freedom may never exist for me. That we will likely not be able to leave her alone.

It comes when she tries to talk to a stranger, or they her; the pregnant pause of them trying to understand what she is saying. My heart breaks when her Dad and I can't understand and we either look to her little sister for translation, or she simply gives up under our repeated attempts to figure it out.

It comes as I evaluate her body composition, wondering if her belly is a little more bloated, if her thighs are a little bigger, if now is the time we will have to exert total dominion over every bite she takes.

It comes if I think too deeply on the fact that she can sit for hours coloring meticulously with a black pen, the sometimes too methodical way in which she reads a stack of books, the instant irritation if someone ruffles the mat under her plate of food.

These all pass through my thoughts and yet, life goes on. I have learned to tuck these thoughts away. I let them pass through without speaking them or giving them much notice. But at times they must come out. At times I must acknowledge that they exist, that this life with Freya has challenges.

Where there are challenges, there is also the deepest love and the sweetest successes.

Sometimes we are able to laugh at our misunderstanding of her words, turning it into a silly game of random sentences and laughs.

I watched in delight as she charmed every Guatemalan grandmother on the streets of San Pedro with an 'hola' and a wave.

I am uplifted by the excitement and joy with which she approaches life. I laugh joyfully at her dance moves and the faces of hilarity she makes to give others laughter.

I indulge in the moments when she has a story to tell, one sometimes difficult sentence after another.

I revel in the absolute love and ease it is to be around her, to sit and color with her at the table or walk quietly amongst the trees.

My heart grows every time I hear her say, whether to me, her Dad or her sisters, "I love you".

What is PWS?

PWS stands for Prader-Willi Syndrome, a genetic disorder on the 15th chromosome. As stated at pwsausa.org :

Prader-Willi syndrome (PWS) is the most common known genetic cause of life-threatening obesity in children.PWS typically causes low muscle tone, short stature if not treated with growth hormone, incomplete sexual development, and a chronic feeling of hunger that, coupled with a metabolism that utilizes drastically fewer calories than normal, can lead to excessive eating and life-threatening obesity. The food compulsion makes constant supervision necessary. Average IQ is 70, but even those with normal IQs almost all have learning issues. Social and motor deficits also exist.